I don’t know about you, but I get comments sometimes when I can’t do something like, “But you did it the other day, you were fine.” I think that’s one of the many things people without MS don’t understand. Just because we can perform a certain task one day, doesn’t necessarily mean that we can do it EVERY day.
Sometimes it is really difficult to explain to others that every day with MS is unpredictable. So one day I might be able to clean house, but on another day if I clean the house I might have to “pay for it” for a day or even a week later. Everyone with MS is of course different and certain activities affect us differently.
I find it very difficult to explain to people why I do certain things knowing that I will “pay” for it later. A lot of people say, “If you know you’re going to pay for it later, why did you do it in the first place?”
This goes for both daily obligations and leisure activities, like when I’m out of the house hanging out with friends, it’s fun and refreshing. I may make a choice to stay out too late because it’s nice to get out of the house and be “normal”. But when I do that (staying out too late, for example), I do it knowing that I will pay for it with increased fatigue or other symptoms later on. It’s kind of like my MS is grounding me for staying out too late.
Even when I decide to clean my house or something similar to that, I do so know that I will deal with increased symptoms later on. By knowing this, I don’t partake in activities that I know I will “pay for” when I have events coming up (like the Holidays) because I don’t want to be stuck on the couch for these events.
I try very hard to stay active and live my life the best way I can but sometimes I find that I don’t always play by all the rules and recommendations. Sometimes I just want to stay out a little bit too late.
I’ve made a tremendous amount of changes in my life because of my MS, and I know my body better than anyone else. So, if I listen to it, I find that I typically know when I am doing “too much”. It is my choice whether to listen to what my body is saying or not and I don’t really need other people to judge my decisions.
For me, managing my life with MS, comes down to a freedom and independence thing. While we understand when others express their concern about certain decision we make… you really, “Don’t get it, till you get it.”